False Start

Posted on by Rob
View from my room at Hotel Simon. We're thankful I have a B room :)
View from my room at Hotel Simon. We’re thankful I have a B room 🙂

Admission and Stuff
I’m admitted and all settled in.  It’s interesting, because I just got a PICC a month ago, but when I got another one today, they had some new technology to use.  Typically when you get a PICC, they take an x-ray afterwards to confirm the line is in the correct proximity to your heart.  Today they used a probe and some leads to confirm the placement.  As they insert the probe, it measures blood flow and my heart rhythm.  The computer then tells them where the “bulls eye” is.  Basically the bulls eye is the best place for the tip of the PICC line to be.  My bulls eye was 5 cm shorter than where they would have placed it.  It’s interesting that before this technology, they would have measure and placed my PICC 5 cm further in.  They say there is no big difference in the effectiveness.  The main use of this technology will be to eliminate the x-ray at the end.  This will save money and save patients from being exposed to radiation.

No Side Effects So Far
So far I’ve had zero side effects.  That might be because I haven’t received the blinatumomab yet.  But I’m not doctor, so who knows.  They didn’t want to start the med in the afternoon.  They will begin administering it tomorrow at 8:00 am.  They are waiting until tomorrow so that the full team can be here to monitor me and they have a full day of people here in case something is needed.  I’m really thinking/hoping this will be a non-event.  However since the drug has some serious side effects and has to be administered in a very specific way, they wanted to start early in the morning, as opposed to the afternoon.  So today has kind of been a false start.  I’m not even hooked up to a pump.  I’ve just been hanging out on the unit and enjoying a day of feeling well before the fun begins.

Like a Virgin
I’ve been told that tomorrow morning, I will be the first person in Indiana to receive Blinatumomab.  As one of the nurses put it, I’m the Blinatumomab virgin.  Now there is some debate as to whether or not a patient got Blinatumomab while at Riley.  But I’m most definitely the first Simon Cancer Center patient to be getting it.  I think that’s part of the cautious approach.  Since it hasn’t been given here before, everyone is double checking procedures and planning every little detail.  I even have a separate Alaris pump solely for the Blinatumomab.  Tomorrow they will put a sign on it to the effect of “DO NOT TOUCH”.  That way no one accidentally stops my infusion 🙂

Long Bone Pain
I’ve been having some pain in my lower legs.  It’s like an aching sensation in the bone.  I took some Oxycontin but it didn’t really help.  The pain is caused by leukemia.  The leukemia blasts fill my bone marrow to capacity and the marrow expands to fit more cells.  Since the bone marrow is expanding, it causes pain in the bone.  It’s expected and there isn’t much to do about it.  Well, cure the leukemia and the pain will go away.

Speaking of Oxycontin
When I was admitted for neutropenic fever, I spent the first day of admission laying on the couch in my room.  It was comfortable and I wanted to be somewhere other than the bed.  Unfortunately I must have laid kind of funny, because I had neck pain the very next day.  I did exercises and used hot packs, but the pain still persisted.  I told the medical team about it and they said the best thing to take was Tylenol.  The problem though is Tylenol will hide a fever and we needed to know if I was getting fevers or not.  So since Tylenol wasn’t an option, we went with the next best thing.  Which of course is Oxycontin.   So yes, I got Oxycontin for a little neck pain.  I still have a lot left and am running a special of $4.99 a pill if you are interested.  Got to pay those bills somehow.

A Duck Dynasty Prayer
Father God, I am ready to start and I place this treatment in your hands.  Please be with my medical team tomorrow.  I pray for mild side effects and for the drug to be effective.  Let the drug kill my B cells.  Please let me achieve remission.  All these things I ask in your name.  Thank you for another day.

22 thoughts on “False Start”

  1. I have been praying for you throughout the day. Hopeful that this treatment will get you into remission so you can get your SCT. We went swimming with your sis and niece today, it was a fun afternoon. Will continue our prayers and our hope for a complete recovery! Interesting to hear about the PICC line changes. I work for a group of radiologists, so I see a lot of chest x-rays come through for PICC lined placement. Technology amazes me! Hope you have a restful night and an uneventful day tomorrow! Wishing God’s blessing on you and your family. -Heather Craft

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  3. Amen and Amen. Praying for you , our little Olive Branch Church is praying for you , God be with you in an undeniable way, may He wrap you in His love, strength, and healing touch.

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  6. So—-if you are treated with Blinta for 9 days, and stay in the hospital for 10 days, and since the treatment starts tomorrow, is today, day 1 of 10 and tomorrow day 2? I am addicted to “countdowns”! : )
    I am confident that having a team of doctors on duty for your treatment offers incredible knowledge and discovery. You will be a part of a groundbreaking drug treatment and return to good health in the process. God is watching over you, and you are surrounded by so many loving prayer warriors! Love you! Mom

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  9. Praying for excellent results beginning tomorrow. I know God hears our prayers. Bless the team of Drs and nurses and all those in charge of making you better. Feel the love and prayers of all those who are out here supporting you.

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  10. We are praying for you as well! My mother had the same type of leukemia and she chose to stay in Michigan to be treated. They actually had treated several patients with it. I was really urging her to stay in the cancer center due to the fact that she had to come here to be evaluated anyway. Since they lived rather close to the hospital it was obviously easier for them to go back to Michigan.

    I know simon cancer center is awesome! I don’t have cancer but I have seen dr nelson for a number of years for immunilogical problems prior to the huge advancement he made in bone marrow cancer development therapies. I’m laughing because I don’t know dr Cripe but I do know dr nelson. Just a little humor for you that I think may make you feel at least a tiny bit better…the first time my husband went with me after we got married (I was seeing him prior) to see dr nelson I had to warn him. I’m not sure if you have met dr nelson yet but you WILL know when you do. He has got to be the most intelligent man I’ve ever spoken with, now with that said he sometimes has a hard time bringing it down to my level. Don’t be afraid to ask questions and get to the real details. So this story I brought my husband along and I’m telling him in the car, well I’m trying to prepare him for dr nelson and his language he speaks and he is literally just shaking his head unable to totally comprehend what I’m saying. We get into the appt his nurse is wonderfully sweet and the hematologist sees me he is awesome as well. My husband looks at me and says I don’t get it. Me, that wasn’t dr nelson…dr nelson comes in and (I know you need a man with some serious skills to help you understand what you may face with SCT so he is da bomb!!!) he starts talking in his very monotone voice and it’s real nasally too which I can’t speak anything about because so is mine (did i mention I see him for immunological reasons) and then the words start flying…now again I don’t have cancer so maybe it wasn’t or won’t be funny to you but just breathe and think of this story when he comes in and I DO believe he will…so the words are flying and my husband is behind him just busting a gut and I’m listening and smiling trying not to error in laughter myself. We finally calm ourselves down when he starts the actual exam and the. The questions start and I finally have to say hey dr nelson remember me, I am super sick and have been since birth and I’ve dealt with quite a bit of medical terms in my short time here on earth both due to my illness and due to the fact that I majored in a medical field, but even so I need you to tone it down a bit. His expression every time is priceless and yes it really is every time bless him!! Now with all that said I know he will take very good care of you better than anyone else could. He has a true gift and has made miracles happen. I read about them often and enjoy his knowledge of how leukemia attacks and his vision and actions on attack on it right back. He believes in what he does with a strong strong passion and he lives to save lives!!

    I was diagnosed last year with two birth defects there at IU by another great doctor in the ERCP unit. I found out after several attmwmlts to treat it that was one in five people in this region (states) that has had this condition. They worked through three years of trying this and trying that and when referred to a special surgeon (only one in the state) that opened me up for a major surgery (we will leave his name out of this) a Whipple procedure and then closed me without doing anything, my ERCP doctor Dr Watkins (truly amazing man in ever way) went to the board of doctors that were working on my special case. This board consisted of about 10-15 doctors one was obviously Dr Watkins a second was the unnamed surgeon and all the doctors were questioning why on earth didn’t you do it. I was privately told this and then somehow magically that surgeon didn’t work there any longer and within three months (through healing time from being opened and shut the length of my entire abdomen and chest) I was referred to the university of Cincinnati where they completed the surgery. I had so much improvement! I know again it’s not cancer and I’m not comparing my circumstances at all to cancer and would never without experiencing it myself. That surgery took away 50-60% of my pain. I went from weighing 90 pounds to now 115. After a short while I also received the recommendation to get a ingrate all pain pump with shhhh fentanyl in it. Although I can’t sell it without opening my gut or back up😉. Prior to this surgery I was malnourished I was maxed out on moriphine, dillaudid pills and also fentnyl patches all at the same time. It’s amazing what they can do with medicine and only wth Gods help we know.

    Again not cancer but WHEN you see Dr Nelson take a moment to just chuckle at his bed side manner. Bless him they are that smart for a reason and he WILL help you achieve remission and a successful SCT!

    I do have a couple questions if you don’t mind and are able to answer them at some point…I’ve somehow missed something and I can’t figure out what the car t is? Where would you have to travel to just for the sake of curiosity because you won’t need to but just because I’m curious can you explain that or point me to where you addressed it. Our family has been following your story and somehow we lost something when transferring from caring bridge. I’m sure you may not remember us but I attended common ground when I was single and then when my husband and I married we were in the Dekyne group and I believe you lived across the street? Maybe? Well regardless you and Lindsay did a couple dinners with our group and we went caroling one year as well. Don’t fret it’s been well I’m I easing here because I’m old (you’re not) like 8 years. Anyway we are prayer warriors in this family. We’ve seen nearly every side of sick mostly within our own walls but unfortunately even with mostly family and some friends outside. As I lay in my hospital bed at home tonight and many before this I am truly thankful. Thankful that I am at home in a hospital bed. We will be getting a wheel chair and a shower chair (I know you have to know the desire to be clean except it’s impossible to stand through it) and perhaps when I can swallow more pride a walker with a seat but because of you and so many others I am thankful for another day. I apologize for the book I just am kinda stuck in my bed and have been for some time so while I can’t see you or physically help I can pray and I can pray hard but I feel like if you new a little about me you might have a glimmer of the prayers being said by our family and many many others. Thank you Rob for being such an awesome example of a Godly man and please give Lindsay our thanks and blessings as well and the wee ones too. Again not cancer but my kids were 13, 12, 10, and 7 when the real chaos started and for the record our family is very close for the very purpose that we had no choice but to be close. Prayers and hugs being sent on angels wings! Thank you Lord for another day! #robstrong

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    1. CAR T is where they take T cells out of your body and engineer them to attack the cancer. They then put the cells back. It’s still in clinical trials.

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      1. Yes well I recall it now so it seems I did get the message☺️ Isn’t it amazing what they can do with science and medicine? They do something somewhat similar to the pancreas in extreme cases but again not always cancer so totally different. They take the pancreas out and well in my terms they blend it all up (it is kinda literally what they do it even looks like a huge blender) and then they put the cells back in to avoid extreme cases of diabetes etc. And one can actually live a good life for some time before they do a transplant. One day they are hoping to not have to do a transplant at all. I mention this because it is the Only treatment that has been recorded with results besides a pancreas transplant for pancreatic cancer. I guess it’s now official in some hospitals but we only found one that would even do it and that was mayo clinic in Minnesota. I had already been there once too cold for me so I chose to just cut about half of everything and see how it worked. So far so good, definitely livable!! Still praying for NO side effects! Sorry I have the humor too, I think you just have to sometimes, I really want to yell out no whammy no whammy and push the big red button from that game show?? I don’t even remember the name or if that word is right. I’m sorry it’s the humor from exhaustion but regardless praying hard that you get some rest because let’s be honest it’s so hard to rest in the hospital at times but we both know to be thankful for their hard work when they’re waking you up at 3 am for vitals blood work and so on.

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  11. Glad you’ve got such a beautiful view from your “hotel” room. Best wishes and prayers as you start this next journey tomorrow. Love the updates and your positive attitude! God bless you and your family!

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  12. Thank you for making an inappropriate painkiller joke….it’s a great reminder of all the spunk and hilarity that this cancer could never take away from you!! We are praying for you, Rob!!

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  16. Praying for you today as you start your first round of the big B! I pray for mild (or none at all!) side effects! And thank you for the laugh this morning with the little joke, cancer can’t bring you down, you’re a tough one!!

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  17. My thoughts and prayers are with you this day. May God’s angels surround you and protect you from any ill side affects. March On Christian Soldier…your plan of attack is a good one and your army seems well equipped!!!!

    Love and hugs to you, Lindsey, and the kids

    Aunt Liz

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  19. Hi Rob. You are consuming my thoughts today. I have said many prayers and am sending warm wishes and healing thoughts your way. I hope that all is going smoothly and your care team is keeping you extra comfortable with minimal side effects. You are definitely a trail blazer, and I think it is remarkable that you are blazing a trail in Indiana that others will follow to full remission! As someone else said, I am Rob(extra) Strong today. 🙂 Hang in there, friend!! You can do this!!!! And please remind Lindsey that I am close by and happy to be of assistance should you guys need anything during this stay. 🙂 God bless and hold you close!

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